Help get Coley to PA for a lifesaving procedure.

A dear friend gave me some advice when I asked her, “ how do you sum up 26 years of life living with chronic illness, needing a groundbreaking procedure that can help fight for your life?” She said, “ just like that…that is how you say it.”

 

We need your help to get Coleman to the Children's Hospital of Philadelphia for a medically groundbreaking, life-saving procedure that can reverse his diagnosis of Protein Losing Enteropathy, which is considered terminal.

 

I am writing to share Coleman’s story. At birth, 26 years ago and just a few hours old, he was whisked away and rushed to Boston Children’s Hospital, blue as can be. I asked the charge nurse, “is he going to die?” And she just shrugged her shoulders because she did not know what to say to me. He was born with a congenital heart disease called Hypo-Plastic Left Heart Syndrome (HLHS). This means he has no left ventricle at all. On the 100th celebration of the Boston Marathon in 1996, he had his first of three open-heart surgeries. The energy in the city was palpable. We knew he would come out of the surgery, and it would be a success. The definition of success for us became very different. It was, “we want him to make it the next few hours” to “we want him to make it overnight.” We took every little glimpse of positivity and clung to it.

These successes became his small milestones and goals. After his first surgery, it was to have him tolerate closing his chest post-op that they had to leave open because of swelling... to then being able to take one ml of fortified formula at a time and tolerate it.

 

As time went on, the successes and goals would adapt to his needs, forever changing and morphing. He would meet milestones, and we would celebrate. We were told he might never eat normally, sit up normally, crawl, walk… typical milestones would all be a challenge to him. Every day I was on eggshells, just waiting. You see, my son Austin, who I was pregnant with before Coley, had passed away in utero, and I had to deliver him. This was a blessing as so many new mommas never get even to lay eyes on their angel babies. So, I was a bit nervous, overprotective and scared to death. Then… then Coley came and showed me he was going to be a spirit that was a fighter, a gentle, loving fighter.

 

I clearly remember walking into my living room and seeing him sitting at about 4 1/2 months old. It hit me that he is going to achieve whatever HE wants and not what anyone THINKS he can and certainly not what my fear dictated. Our perspective shifted, and we allowed him to be a baby, a toddler, a teen, and so on. After graduating high school early in his freshman year, he explored different paths such as bartending, art, computers, writing and many others. He is an avid Magic The Gathering player and made lifelong friends.

 

When Coleman turned 7, we noticed he had swelling in his face and abdomen. I knew something was wrong. It took a year for him to be diagnosed with Protein Losing Enteropathy (PLE). PLE is a devastating diagnosis, as it is considered terminal. It was a new starting point for us and new information we had to adapt to. “There is no cure,” they said. One doctor sat at his bedside and said to this sweet little boy, “we just have to wait for you to get worse, to get sick and then we can try things.” At best, they watch and intervene medically when necessary. There were A LOT of interventions, surgeries, medications, precautions and procedures that he had to endure over the years. He has no immune system, and that in and of itself is a huge hurdle. Some interventions were for him and some for science so that he could help other children with this same disease. Every time he was asked to participate in scientific research and studies, he did it without question. He knew and has known that specialists across the globe would learn from him. His “case” is in (so many I lost count) medical journals and publications.

 

As Coley grew, new meds, new restrictions, new goals and new milestones were to be made. He did it with grace, perseverance and patience. So many tears and moments of our family holding him, lifting him up, being his backbone and advocate over the years. This undertaking is just another moment in time that we are grateful for, to be able to help him be a champion.

 

Seeing specialties in Boston no longer was an option because the leading doctor who treated PLE was in Children’s Hospital of Pennsylvania. Eleven years ago, we started our journey there. So many procedures, horrific procedures, he lived through and was such a champ. Ultimately, he had a lymphatic mapping done of his entire body. This had never been done before. They flew people in from all over to watch this almost 12-hour procedure. A few weeks after this procedure, we had a conference call discussing the results and were told that he would need to be on the transplant list for a new heart. We were devastated; we knew it was coming, but we were overwhelmed nonetheless. During this conference call, we were told that he probably had two years to live because the pressure in his heart was too high, and it would not be able to sustain his life. Well, that wasn’t the case with this guy. He went on a sodium and fluid restriction of only 55 ounces daily; he had a rigorous diet change. To everyone’s surprise, his heart pressure went down, and he was listed for a Heart Transplant at Boston Children’s Hospital. He was their “rock star.” During the conference call, the doctors in Pennsylvania offered us an experimental and dangerous procedure. This procedure had only been done successfully on a German Shepherd dog. I could not allow this to happen to Coleman. I knew there was another way.

 

He has been on the heart transplant list for the past four years. However, he made the most heart-wrenching decision to take himself off the list. He was tired and did not want to continue to pray for someone to die so he could live. As a parent, you can imagine that this was just guttural for our whole family. Five siblings, grandparents, cousins, aunts/uncles, friends who are family who have been with him and us along the way, cheering him on and lifting him, supporting us as a family. We had to accept that this was his decision, and all we could do, collectively, was love him as long as we had him.

 

Fast forward to a few months ago, when he decided to return to the Heart Transplant list because he was not feeling well. The pain every day is getting harder and harder to take. I am unsure how to describe his pain because it is inhumane, but he deals with it daily. Although, if you saw him, you would never know it. He greets people with a smile even on his worst days. He will sit and listen to anyone, cry with anyone, laugh with anyone, and help people process their anger and walk away feeling better. He is special. During this virtual visit to Boston Children’s Hospital, one of our favorite doctors on the planet, Dr. Kevin Daly, told Coleman that he has patients going back to Children’s Hospital of Pennsylvania. There is a new procedure there that is groundbreaking and experimental. However, there have been successes. He told us that this procedure is working, and kids who are going there with PLE and adolescents are going there with PLE and coming home without it. They are coming home not needing to be listed for Heart Transplant anymore, not on fluid restrictions anymore, on much less medication, not in as much pain, and in remission. Then he said, “Coleman, you have been approved.” I had to hang up. We held each other and cried for about 15 minutes. His little sister Charli came into the hug and sobbed with us. We immediately got on the phone and started calling family and friends to tell them the good news.

 

Then came the stipulations: he must go in for five days of testing with grueling medical exams and pre-surgery procedures to get the Lymphatic Embolizing procedure done. Then on the fifth day, after all of these tests and procedures are completed, and they gather all of the information, they will admit him for the procedure. Like I said before, it's experimental and groundbreaking. But... it can save his life. We have to try; we have to get there. It will be between two and three weeks of recovery time in Pennsylvania, and unfortunately, we do not have insurance that pays for anything out of state.

 

We need help, and I’m begging and pleading if anyone could help us, please consider donating and sharing our page. We are looking at tens of thousands of dollars for the procedures, travel, lodging, and food. Please consider donating to us to get Coleman to Pennsylvania for this procedure. I want him to have an everyday life, and I want him to have a happy life. Moving forward, I want him to not be in pain anymore and to be able to go on to college and continue with his dreams; he has so many. He deserves this; he has worked hard his entire life to maintain his health, stay positive, find joy where he can, and spread it wherever he goes. We are the helpers, so it is tough to ask, but Covid struck our family in February 2020. As they say, Coley's dad is a “long hauler” and can no longer work. We used our savings while fighting the insurance company for benefits. We went almost all of 2020 with no income, which devastated us financially. We will get back on our feet like we always do in day-to-day living. This… is different, though. We cannot do this without help. Please consider helping our family get Coleman to Pennsylvania for this treatment.

 

Thank you kindly from the bottom of my heart for reading this and passing it along.

 

Much love,

 

The Candelario Family